摘要
目的:深入分析通用数据元素(CDE)框架和癌症数据标准注册存储库(caDSR)的架构,结合我国生物医学领域数据管理与共享的实际需求提出合理化建议。方法:系统梳理caDSR的实践流程,包括数据元素的标准化转换和注册,通用数据元素的管理、访问、应用与病例报告表(CRF)构建。结果:caDSR及其应用工具支持研究人员创建、注册、管理、访问、共享CDE,并利用CDE构建规范化、可重用的病例报告表,促进了数据资源的标准化收集、管理与互操作。结论:我国针对生物医学领域元数据组织管理与关联融合等技术的研究还处于初探阶段,caDSR的通用数据元素框架与数据整合机制对我国建立标准化元数据管理平台有重要的指导意义。
Objective To analyze in depth the framework of common data elements(CDE)and the overall structure of Cancer Data Standards Registry and Repository(caDSR)with rational suggestions proposed according to the actual needs of biomedical data management and sharing in our country.Methods The whole practice process of caDSR was stratified,including standardized transformation,registration,management,access,application of CDE,and formulation of case report form(CRF).Results The caDSR and its application tools could help the researchers to create,registry,manage,access,share the CDE,and to formulate standardized and reusable CRF by making use of CDE,which has thus promoted the standardized collection,management and interoperation of data resources.Conclusion The research on organization and management of biomedical metadata and their association fusion technologies in our country is still in its initial stage.The CDE framework and data integration mechanism of caDSR are of important guiding significance for our country to establish the platform for standardized management of biomedical metadata.
作者
王安然
吴思竹
WANG An-ran;WU Si-zhu(Institute of Medical Information,Chinese Academy of Medical Sciences,Beijing 100020,China)
出处
《中华医学图书情报杂志》
CAS
2020年第10期15-23,共9页
Chinese Journal of Medical Library and Information Science
基金
国家重点研发计划精准医学研究重点专项课题“重大疾病精准医学数据库群”(2016YFC0901602)
中国医学科学院医学与健康科技创新工程项目“肺癌和结直肠癌高危人群筛查动态队列建设”(2019-I2M-2-002)
基地和人才专项科技基础条件平台专项课题“PHDA国际认证与规范化实施”(NCMI-KD01N-202006)。
